Day 3. Thumbs up (from a little more anxious mother.)

(This post was started yesterday, Monday, July 25, but just never got posted....better late than never!)

I am happy to report we are still getting the thumbs up at 36 hours after Oakes got his 'second wind'. Today Oakes completed his third round of Pherisis with no issue at all. Today his treatment lasted about two and a half hours again, so his Pheresis nurse and I were just chatting it up most of the time. (She grew up blocks from our house and we have several mutual friends!)

Since yesterday Oakes urine output has increased greatly, which we were hoping would happen, so that has been great. He is also about to get a drip of milk in his tummy, and as Mom, I am thrilled. He hasn't had anything in that little tummy since last Thursday at 3pm. Oakes has also come off of his paralytic medicine so he is moving a bit.

The one significant change from yesterday is that Oakes is waking up. His paralytic meds are off completely now and with the sedation med wean he is waking up and moving. After previous procedures weaning his drugs and waking his up comfortably has been an issue and that has not changed. So far as Oakes has been waking up he has been extremely agitated. Around 11am today he started to wake up and his sweet nurse, Carly mentioned to me that he was opening his eyes. I jumped to his bedside and got right in his line of sight. He was just blinking a bit and squirming. Quickly tears formed in the corner of his eyes (break my heart!) and he turned bright red. I simply stroked his head and sweetly talked to him hoping to comfort and calm him but quickly I could tell that he was turning darker red, then a bit purple and finally completely blue with his eyes rolling back in his head. At dark read and stood up to get a good look at him, by purple I was calling for help and at blue I was completely freaking out! When I first went to Oakes' bedside his nurse had been drawing blood to run labs, and when Oakes was first going into distress she had just walked out of the room. When I stuck my head in the hall to call for help I didn't see anyone, but people definitely heard me. It seems like minutes were passing as I stood and watched Oakes struggle to breath, but I am sure it was only seconds. When I turned to look out of his room a second time there must have been 12 people frantically putting on gloves, masks and gowns. Immediately, his vent was disconnected and the nurse had bagged him, she was manually trying to force air into his airway, but it was obstructed so she suctioned him and pulled out lots of secretions and 'plugs'. Very quickly Oakes looked better. His color returned to "perfect baby pink" and he looked restful and comfortable. I on the other had was still freaking out. I had tears in my eyes and adrenaline in my veins. I was standing at the foot of his crib shifting my weight from side to side and at some point in the episode I had to consciously tell myself NOT to pee in my pants!

It is now 5pm and Oakes has had several more episodes. None as scary as the first, but still completely nerve racking.

The attending doctor, Dr. York, has shared with me that the plugs and the 'junk' in his airway and lungs are to be expected and this is a necessary evil right now. She shared that things may get a little worse before they get better. The good news is that Oakes' body is healing. He can identify that he needs to cough and move this yucky junk. The bad news is that there more be a few more scary episodes before we have moved beyond this point.

We have spent most of Oakes' life in the corner of this fantastic and awful 7th floor. Oakes has clearly needed to be here all of that time, but we have had lots of uneventful days and nights where he has been restful and sweet. Most of the time he has followed the course that his doctors have predicted. You have all heard about them and have seen the pictures. It just has been so completely in my face today that today, and tonight and the days to come Oakes really needs intensive care. He needs someone watching him breath and assisting him as he slowly heals.

We will be praying that Oakes finds his way to his usual slow but steady healing!

Day 2. Thumbs up.

So we are not quite 48 hours Post-Op, and Oakes is still stable and strong. Not much has changed from yesterday as far as Oakes condition. He is still paralyzed, sedated, and on a line up of pain meds. As with previous surgeries the doctors and nurses continue to tweak and adjust his meds as his numbers change a little. We have mentioned this before, but it is a delicate balancing act. Both once last night, and then again this morning, Oakes began to wake up, he was mad and his numbers jumped around so they gave him a little more of this, tweaked that, ran labs quickly and then reported back to me that everything looks great again.

The big event yesterday was the plasmapheresis. This is where Oakes' blood is cleaned then pumped back into him along with "clean" donor blood. We were told weeks ago by the Pulminologist that Oakes would need this after transplant because of his super high antibody levels, and we were told that the process can be very hard on babies this little. Greg and I both planned to be here for the treatment and were a bit tense as they set things up. The Pheresis nurse rolled this large machine into the room. It looks a lot like a machine out of a Dr.Suess book. Tubes twisting and turning, knobs, lights, and in the base of it is a drum that spins and pulls the plasma out of the blood. The machine was made in the 80's and it kind of hums and sounds like a machine made in the 80's. It took quite awhile to set things up for the Pheresis, and once they where ready to start the room filled up with with lots of bodies. Attendings, fellows, residents, nurses, techs, and Greg and I holding hands in the corner. Lined up at the foot of his bed were about a dozen different medicine filled syringes in case the doctors would have to support Oakes during the process. All eyes were on Oakes' monitor as the exchange started. We were told the first few minutes were the most critical, and those minutes came and went with no significant changes. At 20 minutes his stats were holding steady and the room had pretty much cleared out. Too boring to hold an audience. Thank goodness. The Pheresis lasted almost 2 and a half hours, and went smoothly. Oakes' blood pressure fluctuated a bit, but that was to be expected. He temp also dropped but that was expected. The donor blood that he received came right out of a refrigerator so he was wrapped in warm blankets and over the 2 1/2 hours his temp adjusted. All was well in our little room. Huge relief.

Once Oakes was unplugged and settled back in, Greg and I headed home to have dinner with Isla and my family before we put Isla to bed. It was a mini celebration for a few good days.

I am back in Oakes room writing this post, Greg is at swimming lessons with Isla, and the Foxes are all heading back to Oklahoma today. Our Pherisis nurse just rolled the Dr. Suess machine into the room, so here we go again.

As I have been writing this I have heard the hospital helicopter land and then take off again. I get goosebumps when I hear those blades humming. I can't help but wonder if a child is being brought here or is leaving or could it be an organ coming? Either way, please expand your prayers not only for Oakes but for all of the babies, and family in this hospital and others! And hug your babies and family members extra tight from now on.

Our love vortex is still swirling. It may be the best kind of medicine in the room right now. Much love to all of you. Becky

Setting up for Pheresis.

The Dr. Suess machine.

You can see the lines of blood wrapping around the face of the machine then up to Oakes bed. He was wrapped to keep him warm as the cold blood entered his tiny little body.

This was at the end of treatment, the large hanging bag is full of Oakes' old plasma.

Donate.

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Organs.

I don't think there is a need to say anything other than, please register!You can do this online, grab your drivers license the process takes two minutes.

Click here to register.

If you are so inclined please pass this on to friends and family. You might also consider reading through the "How you can help" tab for more ways to get involved.

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Blood.

Oakes is literally mintes away from having his blood replaced with perfectly cleaned donor blood. If you don't regularly donate, please consider doing so.

For more info look here....Give Blood

Again, if you are so inclined, you can directly impact Oakes by donating in his name. (You do not have to be in St. Louis to do this!)

Here is what to do: To replace blood used by someone who has already received a transfusion, you would need to use the Replacement Credit process. Replacement donations are used to help replenish the community blood supply and credits can be applied to a patient who is using blood to help reduce that patient’s hospital bill. Simply choose the Replacement Credit option on the kiosk, then fill out the slip that prints with the patient’s name and the name of the hospital they have received blood at. Replacement Credits do not require special appointments and can be completed during the standard donation process.

This was the cooler that brought up Oakes' new blood yesterday. It's amazing that such a small act can help out SO much!

Day 1

At about 5am this morning, Becky's Mom arrived at Oakes bedside. This is the email that she sent out to us:

Good Morning, All,

I got to the hospital and CICU this morning just in time to don my yellow plastic gown, mask, and royal blue plastic gloves (standard attire for EVERYONE in Oakes' room now). Keep your nasty germs to your self! (And the the gloves are definitely presenting a challenge to keyboard accuracy.)

As soon as I got myself in place, Rounds moved in front of Room 9, Oakes Place. There was a full on team! My best laywoman's interpretation of all of the numbers and technical jargon is that at a little less than 24 hours out, all is going about as well as could be expected. They are watching the monitors, heart rate and oxygen levels, drainage, temperature, and he is getting a plethera of drugs to paralyze, sedate, block pain, regulate heart rate, and God and the Attending only know what all else.

Both surgeons were present and lots of technical data was exchanged. When they were ready to move to the next room, Dr. Huddleston, the primary pediatric cardiologist, who has performed most of Oakes procedures turned to me and said, "So basically everything is okay right now." And that's okay by me.

Dr. Caroline Lee, the cardiologist (not surgeon) who has been following Becky's pregnancy and performing cardiograms and echocardiograms stepped into the room just to satisfy her own curiosity and check Oakes out herself. She is the closest thing to having a cardiologist in the family. She is so personable, and obviously very attached to the Ortyls. She asked me all about the family, how many children, where everybody lives, and expressed her gratitude that our family keeps rally behind Becky & Greg and showing up for the big scary procedures. She said it was heartwarming to her to walk into the private waiting room on Friday and find all of us there keeping vigil with Becky & Greg.

Dr. Lee admitted that she is not an expert on lungs, but that she was relieved to see how well Oakes was tolerating he surgery, and her interpretation of all that was said during Rounds was that so far, everything was good.

Before she left, two doctors from the Pulmonary Team came in. Keep in mind, everyone is draped and masked, so there are all of these blue hands shaking each other. I don't think I could pick these doctors out of a lineup, but they both had very kind eyes, about all that is left of the person. They also said that things were going about as well as they could hope for right now. Their biggest concern is the rejection issue, and Oakes is at a higher risk than the already high risk infant lung transplant because of his elevated antibody levels. There are medications that they are giving to help to alleviate the antibodies. They also completely transfused his blood during the transplant to eliminate as much of the rejection issues as possible. Today, Oakes will begin a 5 day process of plasmaphenesis. Essentially, through one of the already inserted ports, they will pull his blood out of his body, through a membrane that will capture the antibodies, and the circulate it back into his body. Depending on his size and how well he tolerates this process (heart rate, oxygen levels, etc.) this could take several hours. They will repeat it for 5 days. Then they will give him donor antibodies to help him maintain the normal immunity that a healthy body is supposed to have. Yesterday,they used a scope to examine his trachea from the inside. To check the points where his trachea was connected to the new donor lungs and branches. This, too, they said looked good.

Another bit of info that I picked up in rounds, and was confirmed and explained by Dr. Lee and the pulmonologists is that the donor lung was a little bit too big for Oakes' lung chest cavity, which required the doctors to do some trimming. Apparently, in cases of infant lung transplant, this is not unusual, and that is easy to see why. I asked them what kind of trauma that creates for Oakes, and they said that it really didn't add to the trauma he was already experiencing. He mentioned something that I'm thinking was there were some drains at the point where the lungs were trimmed. We'll definitely need to clarify all of this.

Becky and Greg, when the pulmonologist left they asked if you two were coming up today, and said they would try to talk to you when you got here.

So, that's it for now. This is a busy corner of the CICU this morning. And I assume it will stay that way, for now. Oakes looks like a little angel, with a wild hairdo. I think the prayer vortex has swept him up to his safe and happy place for now.

Love from Connie Fox Moore/ Ena (Grandma - Becky's Mother)

Mighty Oakes Post-Transplant Update

Good evening, everyone.  Hopefully you are all staying cool and enjoying your weekend with family and friends.  We are at about 11:00 ONL time or 11 hours into “Oakes New Lung” time.  So far, things are going pretty well.  If you’d like a play-by-play of the action last night and throughout this morning, you can check out Beck’s blog at www.babyortyl.blogspot.com.  The abridged version of that is that the transplant was postponed from 10:30pm until 2:45am.  Apparently, the donor’s hospital typically has multiple offers out to multiple other hospitals throughout the country and they need to coordinate the harvesting of all of the organs at the same time, which is really amazing….that was the cause of the delay.  They kept telling us that there was a possibility things could be cancelled if the lungs, at any time, didn’t look darn near perfect.  Anyway, we waited in the same-day surgery waiting room and we were, not surprisingly, the only ones waiting until about 5:30am when the staff came in and then other families started to trickle in for surgeries during the day Friday.  We got updates every 60-90 minutes and then we received visits, in order, from Dr. Lee, Oakes’ cardiologist, Dr. Eghtesady, one of Oakes’ cardiothoracic surgeons and finally Dr. Huddleston, Oakes’ main cardiothoracic surgeon.  All of them said the surgery went well.  The worst thing they could say was there was some hypertension in the veins, but not totally unexpected.  For the first few days, anyone entering his room, including nurses and family, has to wear a gown, a mask and gloves as he is super susceptible to germs (of course, he will always be more susceptible to disease and germs than his peers).  Anyway, I’ve attached a picture of the Mighty man to this email.  This picture was taken about two hours post-surgery.  At some point, we’ll have to name all of the lines, tubes and caths in this picture…but not tonight.

 

So ultimately, Oakes is resting comfortably, heavily sedated and paralyzed this evening and his numbers are all, at this point, very good.  They have actually been aggressively weaning him off of his oxygen already.  So much so that they have been surprised at how much they’ve been able to wean him.  But we are not even remotely close to out of the woods.

 

The biggest issue with any organ transplant is the risk of the patient’s body rejecting that organ.  In Oakes’ case, that risk is significantly higher.  Because Oakes has already had a significant amount of “foreign” blood pumped into his body from his two previous open heart surgeries and because he’s had cadaver tissue implanted in his body for his heart and arterial repairs, his antibody levels are very high.  Set that aside for a moment.  There was a very small chance that they type of donor lung tissue would be the type that Oakes’ antibodies would not aggressively attack, however that test, which was run at the beginning of the transplant, showed that Oakes’ antibodies would indeed attack the donor tissue.  This was no surprise, but because of how high his naturally-produced antibody levels were going into the transplant and because of the fact that we knew he’d produce antibodies to attack this new lung tissue, they have to take aggressive steps to reduce his antibody levels.  First, he required a plasma exchange procedure during the transplant.  This involved, essentially, removing his blood from his body and stripping away about 90% of the existing antibodies.  Second, he requires plasmapheresis once a day, beginning tomorrow, for five days.  Plasmapheresis involves, again, removing the blood from his body through two venous lines, and having a huge machine remove the antibodies again.  Each time this procedure is done, it effectively removes 80%-90% of existing antibodies, which hopefully is a much less number due to the plasma exchange already completed early this morning.  

 

So here we have a four month old baby, having already had two open heart surgeries, with a lung transplant needing plasmapheresis.  It is a mix that St. Louis Children’s Hospital, which has done more pediatric lung transplants than any hospital in the world, has never seen before.  They have done plasmapheresis on heart transplant babies this young before and the data tells them that at some point during Year One post-transplant, the patient’s body will reject the organ.  But if the patient can somehow rally past this rejection, their odds of survival are the same as any other transplant patient.  Of course, that is with a heart transplant, no one really knows about what the stats say about plasmapheresis on a baby as small as Oakes who has had a lung transplant.  Unchartered waters, as usual, for Mighty Oakes.

 

The first plasmapheresis is tomorrow morning, so we are trying to catch up on our sleep after being up for about 38 hours straight as of right now.  If you read some of my posts on the blog, you can sense some sleep deprivation; I barely remember typing that stuff.

 

If you read one of my previous emails (can’t recall which one), I mentioned that one of Oakes’ friends, Ronan, had passed away last week.  It was so shocking and crushing to hear, especially with everything that the Bush family went through with him and his younger sister who was already in heaven by the time Ronan was born.  Anyway, I have read this five times now and it is such an emotional reading for me and Becky – Oakes was named in his buddy Ronan’s obituary:

 

http://www.legacy.com/obituaries/thetimesherald/obituary.aspx?n=ronan-christopher-bush&pid=152675823#.Tila3aTm9uk.facebook

 

On that note, I’m hitting the hay.  We love you all so much and we’d be remiss if we did not mention how incredibly grateful and blessed we are that there was another family out there who allowed their baby to donate their organs, which has, in return benefited Oakes (and it sounds like several others as well).  Organ donorship is the reason Oakes is still alive today and what an amazing gift to be able to give.

 

We will keep you posted on Oakes in the coming days, but as always, please check in on the blog to get more updates and pictures.  Details on The Mighty Oakes Heart Foundation event on November 11^th & 12^th will also be coming soon!

 

Love,

Greg, Becky, Isla P & Mighty Oakes

 

 

Post-Op Update #2.

The bronchoscopy went well. So far everything looks really good, thank God.

The plan over night is to keep Oakes sedated and resting. His room will remain quiet and peaceful. Classical music is playing and the shades are closed.

Greg and I will head home in a bit to crash. Needless to say, we are drained.

Thank you all for your continued love and support and devotion to our might little Oakes.

PS:

Before rounds started Oakes' friend and surgeon, Dr. Huddleston came by to visit. What a long day these two have had!

Post-Op Update #1

Oakes is now in his CICU his room and is resting peacefully. He looks great, his numbers are all great, in fact they have already started to wean his vent! Getting ready for a Bronchoscopy - Doctors will take a peak into Oakes airway to see if everything looks good and will also take a culture of the lung tissue to test it and see how the lungs are reacting so far.

In the meantime, here are a few pics from yesterday and today.

Isla & Oakes right before we walked out of the door to head to the hospital.

Ga-moom Jane & Gam-poom Ortyl rushed to the house to smooch Oakes and stay with Isla overnight.

Just hanging out being mighty cute before surgery.

Aunt Sally and Ena got here at about 1:30am. Plenty of time to snuggle before heading off.

Oakes got lots of love and a few pep talks pre-op.

THE Coleman cooler. Martha Stewart may have an opinions on how this gift was presented and delivered, but we sure don't! (our camera went with Oakes into the OR and I think this is the only picture we will be posting!)

Pappa giving Oakesie a little post-op pep talk. We are so proud of him and so in awe of his continued strength.

Resting.

His new room & all of his stuff.

Transplant Update #6

Dr. Huddleston just left our room after giving us another update. He also thought the surgery went well. They'll obviously be running many tests over the next couple of days to check the functionality and stability of his new lungs. We should be able to see Oakes around 12:30pm or 1pm Central time.

Thank you all for your prayers and well wishes and notes!

Love,
G,B,I,O

Transplant Update #5

Dr. Caroline Lee, Oakes' cardiologist just came to our waiting room. She had just left the OR where she was there checking on Oakes' blood flow. She let us know that Dr. Huddleston thought that things were going "okay". This is a very typical comment from Dr. H (not a lot of commentary), but it is encouraging and Dr. Lee agreed. It was good to see her as she has been with us since October when Oakes was diagnosed and we have asked her to be on our Board for The Mighty Oakes Heart Foundation.

Just as I was typing this, Dr. Eghtesady, the other cardiothoracic surgeon along with Dr. Huddleston, dropped by the room. We didn't know this, but he was in on the surgery helping Dr. H. Dr. Eghtesady said he thought Dr. H did a great job and that overall the surgery went well. He also said that Oakes is off the heart and lung machine. He mentioned a little bit of hypertension in his veins, but nothing terrible and it was kind of expected. So he thought Dr. H would have Oakesie all patched up in another 30-45 minutes from right.....NOW!

Transplant Update #4

Just got another update call. Both lungs are in, everything going as planned, just working to put everything back together now. Another update should come around 10:30am. ♥ ♥ ♥

Transplant Update # 3

Just got a call around 7:30am that everything is going as planned thus far and that Dr. Huddleston is just finishing up the sewing in of the left lung. Another update should hit around 9am or so....

Transplant Update # 2

Sorry for the long delay between updates, we were trying to catch a few Zs. Connie & Dale are now in St. Louis, as well as Phillip and Sarah. They've been here all night with us, trying, mostly unsuccessfully, to catch some Zs of their own. When we first got here to the OR Waiting Room, which is probably 2-3k square feet with several cubicles of couches and a couple private waiting rooms, no one else was here, so everyone took a cube and tried to sleep. Over the last hour or so, as the employees have come in, we've all gotten booted out, back into our little waiting room designated for us and there are 4-5 other families up here now sprinkled throughout the room.

We've had three updates from the OR thus far. The first update was sometime around 3am and was that they were having trouble getting an arterial line in. This is no surprise because they've always had trouble accessing an arterial line with Oakes. The second update, around 4:40am, was that Dr. Huddleston had just started the surgery which means he was making the incision and was about to get Oakes chest cavity ready to remove his lungs (THIS IS SURREAL...I CANNOT BELIEVE I AM LIVING THIS!!). Just got another update about 6am that they were getting ready to put Oakes on the heart-lung machine, which he's all too familiar with. This machine does the work for him while they work on his lungs. Also, the lungs were "almost here". Please lungs, please, please be the right ones for Oakes. God, you can help us out here too. We need some good news from here until, oh, about 50 years from now!

Beck is asleep on a very uncomfortable couch, but at least it's dark in our tiny waiting room. We're all very tired. More later.

Love,
G,B,I,O

Transplant Update # 1

They just took Oakesie back to the OR. Becky was able to carry him right to the steps of the OR, so that was fun. Oakes was smiling, happy, strong and sucking vigorously on his thumb. Connie and Sal made it up from Oklahoma before they took Oakes back so us four showered him with kisses and pep talks and off he went.

We'll get updates about every 60-90 minutes and will try to keep those insomniacs amongst you happy! For those of you following along live, we have a treat for you! This is just a classic picture of Oakes mere seconds before they took him around the corner to the OR. He had peacefully fallen asleep after many smooches to his head!


Love,
Greg, Beck, Isla, Oakes

Focusing on the good stuff.

Sorry about the crick that you are about to get in your neck.

I took this on my phone over the weekend. Oakes has started to giggle and I was trying to record him doing this....enjoy!

Midnight update.

So far, our evening has been quiet and uneventful. Greg and I have been sitting in Oakes dark room while he comfortably sleeps. We both have laptops out, and we are listening to classical music.

We just got an update that surgery is now scheduled for 2:45am. Even though we got THE call at about 3:15pm, the donors hospital was still trying to confirm recipients for other organs up to just a few hours ago.

I was in the cafeteria forcing myself to eat something when I heard the hospital helicopter lifting off of its roof top landing pad. I got goosebumps thinking that could be our transport team leaving, and minutes later Greg texted me telling me about the 2:45am re-shcedule. I'm convinced that was our team leaving.

Isla is at home sleeping with Grandma Jane tonight and the Foxes are pouring into St. Louis again. We have been receiving comforting calls, emails, texts, and Facebook messages non-stop. We feel the love. Please, keep it coming!

We've Got Lungs!!

We didn’t think we’d be emailing you all again so soon, but we really need everyone to upgrade their thoughts and prayers before you all go to bed tonight.  Barring any last minute issues, Oakes’ lung transplant happens tonight from about 10:30pm until about 5:30am.  We got a call this afternoon that was both breathtakingly exciting and incredibly nerve-racking….the nurse coordinator, Pegi, called and said they had an offer for lungs and that we needed to get to the hospital asap.  My mom zoomed over to the house to watch Isla, who was very visibly confused, and we zoomed off to the hospital. 

 

They are doing all kinds of tests on the Mighty Oakes and they’re also reviewing additional data on the donor lungs.  Just before the plane takes off to fly to the secret location, they’ll run another test on the oxygen/gas levels on the donor and if it checks out, they’ll fly to the location.  Once there, the “Harvest” surgeon and accompanying Fellow will do one last second visual check on location, then harvest the lungs, drop them in a Coleman cooler and zoom back to St. Louis.  The idea is to get the lungs into Oakes asap.

 

So there is still a chance that the last minute tests make the donor lungs unacceptable, in which case they’ll deem the mission a “dry run” and we’ll head back home and wait for better lungs.  But if the lungs check out alright, little Oakesie will wake up tomorrow morning a new man…or at least a man with new lungs.

 

We can feel everyone’s love and prayers and it keeps us comforted during this time.  I will do my best to keep you posted.

 

Love,

 

Greg, Becky, Isla P. & Mighty Oakes

The Mighty Oakes Heart Foundation

www.babyortyl.blogspot.com

Mighty Oakes Update 7.20.11

Good evening, dear friends and family.  As always we hope you are all happy and healthy!  If you don’t read anything here, please read the last four or five paragraphs, as that is where we will most need your help!

 

It is hard to believe, but it’s been 17 days since our last update email.  In that email, we had passed along that Oakes had just received three stents in his pulmonary veins with the hope being that those stents would provide some stability from the pulmonary stenosis that had been wreaking havoc with Oakes’ veins.

 

Well, we are happy to pass along that the last two weeks have really been the happiest days of Oakes’ four plus months on earth.  It is clear that, at least for the time being, the stents are, in fact, doing their job and letting the oxygenated blood flow more freely back into his heart.  Remember, this pulmonary stenosis is a progressive disease so we know it will narrow his veins somewhere at some point in time, we’re just not sure if that’ll be this week or in six weeks or when.  The stents are simply to buy us more time in our wait for a good set of lungs.  But at least they are working for now, so we have to focus on these good times.

 

The last couple weeks, Oakes has been full of smiles and stretches and faces for all of his visitors.  He was moved from the CICU down to the recovery unit about ten days ago.  Different from the CICU, the recovery unit typically has two patients per room.  Oakes literally had five roommates in his first six days there!

 

This may surprise some of you, but Oakes actually came home yesterday.  There were whispers about this a couple weeks ago, but we had been down that road before only to have a hiccup or two cause the plans to change.  This time, though, he actually came home!!  Of course, he came home with all kinds of souvenirs again – the oxygen machine, the cannula feeding him oxygen, the NG tube which we feed him through every three hours, his Broviac catheter line which we feed his heart medicine, milrinone, through on a continuous feed and then we also have a fancy pump that regulates the rate at which we feed him through his feeding tube.  He will have a nurse visit him four times a week, a speech pathologist visit once a week to help him learn how to eat by mouth again and a physical therapist visit once a week to help him try to physically catch up to his peers a little bit.  As happy as we are that he is home, you can imagine this is just a different type of stress than the hospital.  It’s truly nice not to have to visit the hospital every day and Isla could not be happier that “Oakesie” is home!  Right when he got home, she asked “Oakesie?  Stay?”  It just made us cry..…because of the cuteness of the question as well as the reality of the answer.

 

So we are just hanging out waiting for a good ol’ set of lungs.  During Oakes’ first night, last night, he was working a little harder than normal to breathe.  We’re not sure what it is, but we’re keeping an eye on him.  We are very sensitive to the “pulling” or “retraction” around his ribs which would be a clear indicator that he is working too hard to breathe.  He is tugging slightly now, but we’re holding out hope that this goes away soon, otherwise we’ll probably have to head back to the hospital at some point.  If the stenosis returns before we get lungs, we’d either have another cath procedure to open up the lungs (possibly including more stents) or we’d move to the artificial lung machine I talked about in my last email.

 

I mentioned in previous emails about fundraising so I wanted to touch on that quickly.  Ever since Oakes was diagnosed with his congenital heart defect while he was in utero back in October, Becky and I have been asking ourselves “Why? …..Why us? …..Why Oakes?”  I mean, this was not in any of our plans and it has turned our lives upside down.  In the last three to four weeks, we believe we have started to understand, at least in small part, maybe “why” this has happened to us.  In talking with the fundraising coordinator at St. Louis Children’s Hospital, she advised us to work with one of three national organizations which assist families in similar positions in fundraising.  The more we looked into these organizations, the more it dawned on us that we should start our own foundation.  We would have more control over where and why the funds were directed and this would create a lasting legacy for Oakes that, hopefully, will be here helping other families dealing with congenital heart defects long after Oakes has left us, whenever that may be.  The fundraising coordinator told us that most of the families she works with are in the position of absolutely having to raise money during the time of hospitalization and post-transplant.  Not all of these families are as fortunate as ours – having a tremendous network of family and friends with the means to help, having amazing health insurance coverage and having one of the best Children’s hospitals right down the road.

 

So we have decided to found The Mighty Oakes Heart Foundation, a non-profit organization dedicated to providing financial support to families coping with the traumatic reality of congenital heart defects, the most common birth defect in the United States.  In an effort to help improve the treatment of congenital heart defects, the foundation will also endeavor to identify leading research and development grant recipients.  We are SO EXCITED about this foundation and really want to make it a success….but obviously we’ll need a lot of help along the way.

 

We are in the midst of putting together a Board of Directors, a website, a logo, a filing for our non-profit status and a huge fundraising event to be held here in St. Louis in November.  Ellen Moriarty, our dear friend, is spearheading the efforts around the November event.  There will be much, much more detail in the coming days and weeks but in the meantime, please SAVE THE DATE – NOVEMBER 11^TH & 12^TH.

 

All of you are asked to contribute to charities throughout the year – ones close to your families or other friends, ones that let you play golf on a work day J, ones that help with some current tragedy and many others.  This just happens to be one that is close to our family and close to our heart and, obviously, Oakes’ heart.  And we think we can help a lot of families, families that we have gotten to know well. 

 

Oakes lost one of his new friends from the CICU last week.  Ronan, the little boy who was the first baby to be put on the artificial lung machine, took a turn for the worse one night last week and passed away.  It was crushing news to hear because him and his family had been such a fixture on the floor and Becky had befriended Ronan’s mom….and then one morning we came in and his room was empty and everyone was gone.  Ronan’s family had a baby girl a couple years ago with a rare disease that there was no cure for and she passed away as an infant.  They were told if they had another baby the odds were something like one and 10,000 that the baby would have the same disease…..then Ronan was born, with the same disease.  Fortunately, this time around, the artificial lung machine was available to buy Ronan some time while they tried to “fix” him.  Ronan’s family had spent the previous few months staying at the Ronald McDonald House here in St. Louis because they lived in northern Michigan.  This would be the exact type of family we’d love to be able to help.  Not that things would have necessarily turned out different, but helping make their lives easier while dealing with such an emotionally-draining and physically-exhausting (not to mention expensive) time in their lives.

 

That’s all we have tonight although I did attach a classic picture from last Friday of my gorgeous family.  This is my phone screen saver; love it!  I’m sure Beck will be posting additional pictures on the blog soon as well.  Enjoy, keep the prayers and thoughts coming and we’ll be in touch soon!

 

Love you all,

 

Greg, Becky, Isla P. and Mighty Oakes

www.babyortyl.blogspot.com

 

 

Oakes is 4 Months Old Today!

And he is doing better than ever and looking cuter than ever. As soon as I got to the hospital this morning, I got busy getting ready for our photo shoot. Oakes got a bath, his hair washed, toenails trimmed, and about a dozen nibbles to the neck and another two dozen kisses!

Have we mentioned Oakes has 2 teeth? (if you click on the photo it will open much larger in another window so you can really see his pearly whites!)

Mid-shoot a nurse came in and offered to take a few pics, do we look alike?

Right after the photo shoot I dressed him and snuggled him back in bed where he quickly dozed off. But not before he smiled a few more times....

I asked if he was tired and he responded, "Just a little bit!"

And have we mentioned that he has found his thumb?!

Sucky-thumb sleeping with a smile, what a great day we have had....We love my little Oakesie!

A Happy & Hiccuping Oakes!

We are just in LOVE with this happy, smiling and noisy little man!!

A bigger update to come, but we have had an uneventful, stable, and healing week in the CICU. So much so that we are heading back to 7West tomorrow. The prayers are working, please keep them coming! Love to all of our friends and followers!

Mighty Oakes Update 7.3.11

Good evening friends and family.  We hope you are in the middle of a fantastic holiday weekend with your families.  The last email we wrote, we had told you that Oakes was doing really well and that he had recently been removed from the ventilator.  For the following week or so of that email, Oakes continued to exceed everyone's expectations.  You can check out the blog, but Becky got some amazing pictures of the Mighty Man.  For that week or so, he was smiling, engaging, super alert and very aware of everything going on around him.  It was undoubtedly the best condition we had seen him since late May, right before he had the emergency heart surgery on Memorial Day weekend.  Becky and I got to hold him numerous times last week and it was totally uplifting to be able to hold him, stare him in the eyes and have him smile back up at us.  As abnormal as our lives have been, there was a certain sense of normalcy around last week because he was just doing so well….

 

But our rollercoaster continued late this past week.  Although Oakes was off of the ventilator, he still was receiving a little help from a cannula delivering just a couple liters of oxygen to his lungs.  They had weaned him so much and he was tolerating it so well that he was moved to the recovery unit (7 West – literally down the hall from the CICU where he's been since 5/27).  But after just barely 36 hours on 7 West, Becky noticed him working a bit harder to breathe.  It got worse throughout the day and when the doctors came in, they did not like how much he was "retracting" (the heavy pulling he does under his ribs when he's struggling to breathe).  She knew right away, they were going to take him back to the CICU.  It was such an emotional letdown for all of us because he was just doing so well we had this false sense of hope that maybe he was going to figure out a way to get home with us….and then completely out of the blue, he turned for the worse.  He was struggling enough when they moved him back to the CICU this past Friday, that they decided to intubate him right away.  They completed an echocardiogram right away and took some labs.  The doctors were concerned enough by the results that they scheduled another cath procedure for first thing Saturday morning (yesterday).

 

If you recall, the last cath procedure he had did not go well at all.  As the doctors were prepping me and Becky for the cath, it was without a doubt, the most direct and the most ominous language they've used with us yet.  Dr. Balzer, the head of the cath lab and the doc who performs all of the major cath procedures at St. Louis Children's Hospital (SLCH), came to talk to us before they took Oakes to the cath lab.  He said that during the last cath, Oakes' pulmonary veins "spasmed" in a way that he had never seen.  He told us that because of that, this procedure was anything but a sure thing.  Their intent was to go in, review the blood flow in the heart and lungs and probably balloon all four pulmonary veins.  Dr. Balzer also mentioned the possibility of the insertion of stents depending on what they found.

 

What has been causing the breathing issues all along has been a disease called pulmonary venous stenosis, which is the narrowing of the pulmonary veins (four smaller veins that take blood from lungs back to the heart).  It's a brutal disease that gets progressively worse over time and because of the fact that most of these veins exist deep within the tissue of the lungs, there is no operation that exists which can be a quick fix like the operation that Oakes had on 5/28 when they were able to increase the size of his pulmonary arteries (two larger arteries which take blood from the heart out to the lungs).  The cath they did on 6/9, scary as it was, actually succeeded in temporarily relieving the narrowing that had occurred in the pulmonary veins, but all of the doctors were very clear that the stenosis would return and continue to worsen.  Sure enough, that's what was happening to poor Oakesie the last week – the veins were just getting more and more narrow and his heart was working harder and harder to get blood through it. 

 

As the doctors were assessing Oakes' condition Friday into the afternoon and evening, they began to relay to us that the cath was needed to buy Oakes more time until they can find a proper donor set of lungs.  The slight hope that we had held on to around the small percentage chance that there could be a surgical fix before resorting to a transplant was gone – a lung transplant is definitely on the horizon for Mighty Oakes.  Although the doctors were clear this was a long shot, it was still a crushing dose of reality for us both.

 

As Dr. Balzer was going through his final words of wisdom prior to taking Oakes to the cath lab, Becky and I were half listening to him and half staring at Oakes who had been sedated and sleeping since we had arrived at 9am.  All of a sudden, with Oakes' head facing both of us, he widely opened his eyes and looked right at us!  We immediately thrust our heads down toward him to talk to him.  I told him his papa was there and that we loved him.  He looked right at me and gave me a big ol' smile!  He then looked at Becky and did the same thing.  We, of course, started crying.  It was like Oakes, the one who should be scared, was the one smiling and calming his mama and papa.  It was something we'll never forget.  Of course, the doctors didn't like how awake he was, so they gave him a triple shot of sedation medication and within a couple minutes he was back asleep, but what a moment!!  It was crazy because in the past when he wakes up, he struggles to open his eyes and kind of opens one before the other, but here, he just opened them both right at the same time.

 

So the cath went surprisingly quick, maybe three hours all told.  Dr. Balzer did indeed insert three stents – one to his lower right pulmonary vein (PV), one to his upper left PV and one to his lower left PV.  The venous tissue will ultimately grow in and through these stents which, again, means that the next step has to be a lung transplant.  These stents cannot be removed without significant complications.  What the stents will do is provide more longer term support, hopefully, for Oakes.  They're more permanent and will keep the stenosis at bay, but only where they were inserted; the stenosis will continue elsewhere along his pulmonary veins.

 

So what happens if we haven't found suitable lungs and the stenosis further down his PVs are causing breathing issues?  Then we'd be introduced to the Quadrox machine, the pediatric version.  The Quadrox machine is essentially artificial lung support.  You will find this hard to believe, but the Quadrox is a small "box" that sits at the foot of the patient's bed and oxygenates the patient's blood.  It literally has tubes that run from the heart to the machine and back to the heart, so that the machine is essentially acting as the body's lungs.  Is that insane?!??!  The pediatric version, we believe, was just publicly released in late April of this year.  There have been, we think, three children here at SLCH who have been put on it, including our friends daughter, Elizabeth, just a couple rooms away.  The doctors have told us Oakes would be the ideal type of patient for Quadrox, if he, in fact, does need it.  This is a bit too intense for me to process just yet, but at least I've introduced it in case it becomes reality.  If you're so inclined, here's a link to a picture of the Quadrox - http://www.maquet.com/productPage.aspx?m1=112599774495&languageID=1&titleCountryID=103&productConfigID=126054034616&productGroupID=121118652068 .

 

Thus far, Oakes has done well since yesterday's cath – he's not retracting, he's responding to his medications and he's been calming down very nicely when he gets agitated.  They are very aggressively weaning him off of the ventilator since they believe the stents will better support him this time around.  He's still fairly medicated, but is slowly becoming more alert.  He's sucking on his ventilator tube as I type.  And believe it or not, their goal, as of now, is to extubate him by tomorrow afternoon or evening.  They've already reduced his support down to levels that it took more than a week to reduce after the last cath so it appears the stents are doing what they're supposed to do and that Oakes is kicking butt, as usual. 

 

I know I am biased, but I cannot be more proud of my son.  He just had his fifth surgical procedure in just over three months and continues to rise to each challenge in front of him.  He was not blessed with perfect organs but it's so clear to us that he was blessed with incredible strength and determination and the amazing ability to inspire thousands of people he's never yet met.

 

Becky's oldest brother, Phillip, got married a week ago Saturday (6/25) in Oklahoma City.  Our daughter, Isla, was scheduled to be the flower girl.  With everything going on with Oakes, we just didn't know if we could make the wedding or not.  Also, I had a big company meeting in Dallas for four days last week.  I've not been able to travel much, for obvious reasons, but this was a trip I really had to try to make.  So Oakes being Oakes rallies so well the week leading up to the wedding, that Dr. Gazit told Becky he thought she should go to the wedding, so her and Isla flew in to OKC Saturday morning, went to the wedding, had an absolute blast, then flew back Sunday afternoon.  Phillip and his new bride, Kat, had a great wedding and the pictures of Isla and her cousins romping around the dance floor were hilarious.  Oakes maintained his stability throughout last week allowing me to complete my trip to Dallas.  It was literally upon landing that Becky was told he was moving back to the CICU.  It was such an awesome gift to his parents – it was as if he was saying "I'll be fine guys, go do your thing."  His little body held out just long enough for both of us to be back in town.

 

Becky's dad, Bill, and stepmom, Jan, helped out this past week (again) while I was out of town and her mom, Connie, and stepdad, Dale, have been here this weekend.  Between the four of them, they've completed about 10 home and yard improvement projects around our house that we have had neither the time or the talent (me), or both, to do on our own.  People keep dropping off food and groceries and sending cards and prayers and well wishes and emails and texts.  You are all too incredible and we never, ever take our friends and family for granted. 

 

In case you do better with pictures vs. my ten thousand words, I've updated the PowerPoint I did a couple emails ago.  I also added a great pic of Oakes from earlier last week when Beck gave him a faux hawk; it's priceless.

 

We will keep you posted, but you may want to subscribe to Becky's blog so that you  get updates in between my email novels….Happy 4^th everyone!!

 

Love,

 

Greg, Becky, Isla P. & Mighty Oakes

www.babyortyl.blogspot.com